May 31, 2017

So many changes. So much uncertainty. The universe just strapped a rocket pack to Schuyler’s back. We shall see what this phase of her life ultimately looks like, and how well she’ll do as she steps out into a world of superficial but pervasive human valuation. It’s a lot to take in, and I am perhaps more worried about her than I’ve been at any time since her diagnosis fourteen years ago. But even with all her anxiety and also my own, I have to say it. I like her chances.

January 25, 2017

Schuyler was surrounded and engulfed and protected by a sea of women, and she understood, I think maybe for the first time, just how large her tribe could be. As she grows older, Schuyler's people becomes a more inclusive group, more intersectional. She took a big step at the march. Her disability advocacy took on more feminism that she'd felt or shown before. Her world grew bigger, and with it her protest and her advocacy.

October 5, 2016

Years from now, I hope we see these small expeditions as the beginning of Schuyler's true adventure, the one she takes on by herself, in a world that may be as unprepared for her as she is for it, but which will be hers for the taking nevertheless.

August 24, 2016

In years past, her first day of school nerves were pretty epic. This year, it wasn't such a big deal. She got dressed in the outfit she'd been planning for weeks, with her hair newly dyed in a fantastic purple that really has to been seen to be truly appreciated. We sat outside waiting for her bus, and right before it got there, we fired up Pokémon Go on our devices to discover that a Pikachu was standing next to us. If you play the game, you probably understand what a big deal that was, having him standing right there mere feet outside our doorway. (Just go with it, please.) Schuyler was thrilled at her miracle Pikachu. She climbed on the bus, fantastically cool omen critter in virtual hand, and she never looked back.

August 17, 2016

Our big plans for the new school year don't always work out, and sometimes they REALLY don't (hoo boy, let's swap some stories!), but what you learn after a while is that it's the small things that sort of anchor the tent in the wind. It's doing that first walk-through where your kid maybe finds the anchor points in the building where they can get their bearings, and you get the sense that perhaps your kid won't get lost on the first day, or at least not on the second. It's that moment when you see another kid greet yours like maybe they might be friends, and they don't seem to have any obvious psychopathic tendencies or visible swastika tattoos. It might just be that small feeling, the one that suggests that this is big, but it's not too big. It's doable.

July 12, 2016

There's a lot more for Schuyler to unpack about this, some of it making zero sense at all. I'm not sure Schuyler entirely comprehends racism, except of course she understands being hated and abused or even just dismissed for being different, so I suspect racism's one she probably gets. It's hard to explain to her when she's probably safe and when she's not, because I don't know myself. Schuyler's white, she's a woman, and she has a disability. She'll probably be just fine in a way that is horribly unfair, until the day comes when she's very much NOT fine, also in a way that is horribly unfair. She has both privilege and disadvantage, neither of which is easy to explain to her.

June 27, 2016

It's easy to think of Miracle League as a place of gentle interactions, but that's really not the case at all. The players push hard, although when someone gets knocked down, everyone goes full Chumbawamba immediately. The kids compete fiercely, but it's complicated, because they're not just competing with each other. They push themselves hard, they focus on the task at hand, and they are in a constant state of simultaneous conflict and negotiation with their disabilities. When professional athletes claim to leave it all on the field, this is what that really looks like.

March 4, 2016

There's a quote that seems to originate from a number of sources, which isn't surprising since it's not terribly original. But it is terribly true.

"You may be done with the past, but the past isn't done with you."

I returned to West Texas this week for that most compelling of homecoming reasons, a funeral. My Aunt Kay died last week. She was married to my father's brother, but she was also my mother's childhood friend. The four of them were the closest of friends, and that closeness applied to all of the cousins as well. We functioned like an immediate family; all of my childhood memories include my cousin/best friend, as well as her cooler-than-cool dad and her impossibly kind and good-hearted mom. When Uncle Tommy died in 1979 and our families drifted apart, something cracked in my family. When my father died eleven years later, that something shattered altogether. I don't think we ever entirely recovered.

Going home this week was about saying goodbye to someone who existed as a central fixture in my childhood, but it also served to try to place that childhood family experience in a larger context. Schuyler went back with me, partly because I thought it was important for her to begin trying to understand the whole end of life process but also because selfishly, I didn't want to go alone. Five and a half hours in the car from Plano to Odessa leaves a lot of time for conversation. When Schuyler asked if she had ever met Kay, I realized with sadness and shame that they had actually only met once, when Schuyler was a baby. It had been so long since I'd seen Kay, or my cousin Pam, either. Pam and I spent our childhoods basically functioning as brother and sister, and I hadn't seen her in fifteen years. Aunt Kay was part of a different life, one in which my family was whole and the future was whatever any of us wanted it to be. My life hasn't turned out like I ever imagined it would back then. Maybe that's true of us all, I don't know.

It happens, I suppose. You put your head down and you live your life, and then one day something terrible happens and you realize that you've let things slip out of your hands that never should have been treated so casually. I loved my Aunt Kay, as I loved and idolized my Uncle Tommy and as I adored my cousin. My memories of them are almost entirely from childhood, from a time so long ago that it feels slightly unreal in my memory, and from a place so unlike anywhere else in the world that it is almost impossible to describe without sounding like I'm making it up. West Texas in the 1970s really does represent a world that was very different from whatever past you probably know.

The time of my childhood is remote. The place, less so. Returning to Odessa is always something of an emotional shake up for me, but now, in the context of returning to embrace not just family but the family and the life of the past, it really is overwhelming. I sometimes turn to music to put it in perspective. Not the popular music of my youth, or the country music that was always present when my father was around. I actually associate home with specific classical pieces. Aaron Copland's celebrated Americana, for instance, like the slow movements of Billy the Kid or Rodeo or even the very end of Appalachian Spring. Big, lonely prairie landscapes in sound, albeit a little cliched.

The music I associate with home isn't about cowboys or even people, which is just as well since my ancestors weren't cowboys or romantic lawmen or heroes of the Alamo. They were the oilfield poor, living in primitive camp houses with faded, peeling paint and cheap screen doors and the occasional snake in the living room. That was my family's world, at least until my father's generation changed course. Uncle Tommy joined the army and moved to New York for a time, probably enough to get a taste for a life different from his own father's. My own father quit the oilfield after watching a friend and coworker burn to death in a horrible accident. My family grew from a hard and dirty industry, but one that hardly any of us still living have any experience with. I have petroleum in my blood, but none under my fingernails. For the first time in my life, I actually find that I regret that, maybe just a little.

Growing up there, I always understood something about Odessa, or any town out in the desert, and it's something of which I'm still very aware. Experiencing that part of the country isn't really about understanding the towns, not even larger ones like Odessa or Midland. West Texas gets under your skin when you drive outside the city limits, and not necessarily all that far, either. As soon as I was old enough to drive, I would sometimes head out to the edge of town, where imported and pampered green gave way to mottled brown. I'd eventually pull off the farm roads and follow a dirt road until I found an open spot where the mesquite bushes had been cleared, usually to accommodate a pumpjack. I'd lay on the hood of my car and listen to the rhythmic wheezing of the well, and I'd watch the sun set in a mess of vivid color and take in the sight of the stars sprawled out across the sky. Sometimes I'd see jackrabbits racing through the brush as I approached, and once I even saw a rattlesnake lazily twisting across the road in front of me. But mostly it was just silence and solitude, bigger than anything I've ever experienced since. The daunting but quiet snows of Michigan, the rolling waves of Long Island Sound, the towering Redwoods of northern California, some of my favorite places in the world, but none could quite compare to the almost oppressive silence of the West Texas desert.

When I'm not there, when I'm living my life in various cities as I have since I left Odessa at eighteen, I still feel the desert of West Texas. When I'm in large groups of people or in busy parts of the city, surrounded by beautiful chaos, part of me is still back home in wind-tossed solitude. Back in my youth with my family, including all those who have slipped away in some way or another, I didn't understand it, I don't think. I didn't really hear the weird, loud silence of West Texas.

My father did, I know that now. He longed to get out into the wilder parts, and we did, often. My father and I had a complicated relationship, as he had with most of our family, and I didn't always fully appreciate trips to the lake or the camping excursions to places like Fort Davis or Big Bend. But I guess I was soaking it in just the same, because I think I'd give just about anything to go back. Not just to the place, but to all of it, with my mom and my dad and his cool older brother who never got to be old in my memories, with my own siblings and my cousin, and with my aunt, to whom I never got to say goodbye. I never got to say goodbye to any of the ones I lost; my family hasn't had a surplus of lingering hospital deaths. Just unexpected phone calls with sad voices and then hurriedly packed suitcases. And memories, played out against that huge desert, always present.

I left the desert as soon as I was old enough, or I guess I thought I did. Maybe those of us who lived there never really get to entirely leave it behind. It speaks to me. Is that strange? West Texas has a voice, and a kind of ancient loneliness. It predates the current fracking boom that has exploded my town with apartments renting for two grand a month but which will probably be occupied by mice in a few years now that the bust is looming. It's a towering sadness that goes back before high school football and my family's departure from the oilfields, back before dusty depression era towns and the first oil strikes, before the US Army and its experimental camels and before the Mexican settlers or the invading Conquistadors before them, before the missionaries came with their god and even before the Mescalero-Apache and Comanche came with theirs. I can imagine the desert how it must have been before humans arrived at all, because it almost certainly wasn't very different at all from now.

That looming sadness comes not from tragedy or hardship, although that desert has certainly known plenty of both, as my own family knows all too well. I think it comes from that very timelessness, that sense like nowhere else in the world I've ever seen, that this world has rolled along for millions of years, and our presence won't matter for more than a blink. A few jackrabbits will hear us and scatter, and maybe our footsteps will startle a few horny toads (if we can even find them anymore), but that's about it.

And yet, those of us who lived there and those who have gone back to that receiving earth are a part of the West Texas desert. I've known so many people who have visited it and who simply don't understand how anyone could feel fondness and that low-burning homesickness for such a hard, barren place. Those of us who grew up there joke about its remoteness and its flatness and the rough people who live there, people with whom we like to pretend we have nothing in common but from whom in reality we are separated only by years and experiences.

I hear it all the time, and I've said it to myself many times over the years.

"How could you ever live in such a place?"

And then that ancient voice whispers, "How could you think you could ever truly leave?"

January 4, 2016

We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.

December 23, 2015

As an author or a public advocate and speaker, it happens every so often. You'll be in a public place, and someone will approach you, ask if you're Your Name (note: if they actually say "Your Name", give them some personal space), and proceed to tell you how your work has inspired them or reached them in some way. There are a lot of good things that come from writing and speaking on disability, but this is easily one of the very best. You reached someone, and you made a difference. That's a hard feeling to beat.

It happened again this morning. But not to me.

It happened to Schuyler.

We were at the movie theater, on our way out, when a young woman approached her.

"Hi, you're Schuyler, right?"

Schuyler smiled shyly and nodded. The young woman proceeded to tell her how she'd heard Schuyler speak at the Region 10 Service Center over the summer, and was really affected by her presentation. She explained that she's a teacher and works with elementary school kids and assistive technology like Schuyler's. She said Schuyler was an inspiration to her and what she hoped to see from her own students.

(At one point, she quickly turned to me and said, 'Oh, I enjoyed your talk, too." It was really nice of her, but totally unnecessary; I am more than happy for Schuyler to own her moments entirely.)

Schuyler smiled hugely and thanked her, and then just like that, the encounter was over.

Except it wasn't over. It'll never be over, not for Schuyler, and not for me. I've been a tenacious and loudmouthed but wildly imperfect advocate for her. Now it's her turn, and moments like this are going to help define the kind of person and advocate she wants to be.

To hear from a stranger that her words and her example are making a positive difference in the lives of others like herself, "with little monsters of their own", as she puts it? You can attach value to a lot of things in this world, but a moment like that is truly without measure.

As for my own feelings of pride for Schuyler, my own words are entirely inadequate. So I'll just leave it to you to imagine. (Think big.)

November 2, 2015

It's no secret that letting go of Schuyler's chaotic, sometimes troubled but always adventurous childhood has been difficult, mostly because what lies ahead is so mysterious, and where special needs parenting is concerned, mysterious is never comforting. Every time she picks up a piece of her own advocacy, Schuyler puts down just a bit more of a deposit on the future. On her future.

I think it's safe to say that for as long as Schuyler wants to do it, and assuming we're asked to speak again, this will be the format my future presentations will follow, with ever-increeasing participation from Schuyler. She says she's game. (She wants to present in Hawaii. I'm not opposed to this idea.)

As I promised at the time, and of course with her permission, here are some of Schuyler's answers and statements from yesterday's presentation.

INTRODUCTION

Hello, my name is Schuyler Rummel Hudson and I am a tenth grader at Jasper High School. I'd like to talk about my life and tell you why I've been using my devices to help me talk. First I used a HipTalk, then my Vantage, which I called the Big Box of Words, and then my Vantage Lite that I called Pinkessa. Now I use an iPad Mini called the Queen of Monsters with my speaker. I am happy to be here with my father and mother to share my story with all of you.

OBSERVATIONS ON HER AAC CLASS IN ELEMENTARY SCHOOL

In my AAC class at Gulledge, we learned to use a computer, our devices, and to read books. Every day I went to my other classes after the AAC class and used my device in class. Back then, my teachers worked together, but now they don't. Some of my teachers did know how to use my device, and some didn't with my big box of words. Now, most of them understand better than back then. It think it’s because I have an iPad and they know how iPads work. I learned a lot about how to use my devices back then. I don't think I need a class now but I miss being with my other friends who talked like me.

USING HER IPAD

Which app do you use for speech? Why did you choose that app?LAMP Words for Life, because it works like my old devices, the Vantage, and helps me to talk to others.

What else do you use your iPad for?Games and movies and drawing and listening to music. I use it to send messages and Facebook.

What are your favorite games?Monument Valley and Subway Surfers

How do most people who are meeting you for the first time react when you talk with your iPad? Positively, or negatively? Positively. They think it is cool and ask questions about my iPad.

What is your favorite accent to use on your device?I use Emma voice with a British accent.

If you could change one thing about your communication device, what would you change? I like it the way it is. My iPad is not loud but I have a speaker.

Do you notice people treating you differently when you are using an iPad than when you were using the Big Box? With the Big Box of Words, they think that I am dumb and weird. When I use my iPad, people think I am like anyone else.

How would you explain your speech device to someone who had never seen someone talk like you do before? It speaks for me because my brain doesn’t want me to talk.

Can you talk a little bit about how you make the choice to use your own voice or use your iPad to communicate? For example, which situations you would never use your iPad and which situations you would always use your iPad? I sometimes try to talk with my voice first. When people can't understand me, I use my I-pad to talk. I use it at school in class. I also use it to order food when I go out with my parents.

NAVIGATING SCHOOL WITH HER DISABILITY

What are some things that teachers have done that have helped you to have good experiences in the classroom? I get help with math and science at my school. If I don’t understand the problem, my teachers tell it to me different.

What are some things that teachers did that you didn't like, or that you found unhelpful? Sometimes they go too fast and they don’t help me.

What is the one thing you hate people presuming about you, before they know you? They think that I am dumb and weird and I am not smart at all.

What has been your favorite thing about school?Meeting new friends and teachers. I like to learn new stuff. I like playing percussion in the Jasper Marching Band.

What is your least favorite thing about school?Homework

(Accompanying slide)

ON BEING SCHUYLER

What do you plan to do after high school?I think I am going to travel to Hawaii and China. I want to get married and get a job.

What is your favorite movie? Why?I have a lot of favorite movies, it's hard to pick. I like Jurassic World and Godzilla and Pacific Rim. The movie I’ve liked the longest time is King Kong. That will always be my favorite movie. I like monster movies with my dad.

What is your favorite thing to do for fun?Play the Wii U with my parents. I also like to swim and play soccer and baseball in Miracle League.

What made you decide to dye your hair?I want to be different but I want to pick how I’m different.

Who do you see as your role models or people you really admire?Amelia Earhart and Stephen Hawking

What do you want to do in the future?Maybe to help sick children and the poor and people like me with little monsters of their own.

If you could tell people one thing about your little monster, what would you tell them? It makes it hard to talk and sometimes it makes it hard to understand things. My monster is a butthead!

If you could tell your little monster one thing, what would it be?Get out of my head!

What kind of music do you listen to? What is your favorite song?I have a lot of favorite songs, it is hard to choose one. Right now I like Waiting for Superman and Black Widow and Release Me. My favorite artists are Lady Gaga and Florence and the Machine and Selena Gomez.

I'd like to know, what do you like about Plano and the Dallas/Fort Worth area? I like Six Flags, the Dallas Opera, Hawaiian Falls, Mexican food, and the zoo.

If you moved away, where would you like to live?England or Hawaii or Vermont.

Do you see yourself becoming a writer like your dad one day?Sometimes. I like to write stories and poems.

What do you like to learn about?Art and science

What is your favorite season and why?Summer, because I can see my dad's friends and have fun and swim!

What is the best Halloween costume you have worn?I have a lot of favorites. Medusa and Amelia Earhart and Brunhilde the Valkyrie.

(Accompanying slide)

What skill do you want to improve?Listening and being a percussionist who plays the drums.

If you had a ton of money, what would you do?I would travel and see the animals in Africa.

What is your best personality trait?I am funny and always happy and a good dresser.

What do you love about your life?Having the awesome parents and the best friends too.

What is one thing you thought people would ask you but no one did?No one asks about my favorite monster.

You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

June 9, 2015

As I have mentioned before, I will be presenting the keynote address on August 3 at the Region 10 Service Center in Richardson, Texas. Here's the information:

Title:Ten Years of the Big Box of Words
￼Presenter: Robert Rummel-Hudson, Author
Schuyler Rummel-Hudson, Student/AAC user

Abstract:
Ten years since his daughter’s first encounter with Augmentative and Alternative Communication, Robert Rummel-Hudson (author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, St. Martin’s Press 2008) reflects on his family’s experience and his observations on the present and future of assistive technology and disability advocacy. He will be joined by Schuyler, who will share her own perspective on her life with her Big Box of Words.

The most interesting thing about that abstract is the fact that Schuyler will be joining me, as a co-presenter. As we start putting our presentation together, she's trying to organize her thoughts. After talking about it, we'd decided that rather than just sitting down and trying to write something off the top of her head, Schuyler would rather answer specific questions and integrate that into her presentation. And she would like to get those questions from the many people out in the world who have followed her story for so long.

So if you have a question that you think would help Schuyler present her story, you can ask it in the comments here, on my Facebook page or via email at rob.rumhud@gmail.com. We talked about what kinds of questions she'd be asked, and came up with some categories that she's comfortable with.

1) Her use of assistive technology over the past ten years.

2) Her experiences in school.

3) Her experience with polymicrogyria, her "little monster".

4) Her future, both school and her adult life.

5) (And this is a big one, I think.) The parts of her life and her world that have nothing to do with her polymicrogyria. The Monster-Free Zone.

We both thank you in advance. After our presentation on August 3rd, I'll reformat her answers and post them here for everyone.

February 3, 2015

Schuyler's evening was complicated. That much I can say. It was complicated for all the reasons that are obvious, and for all the ones you never think about. It was complicated because she looks like any other fifteen-year-old girl dressed to the nines at a high school dance, and it's complicated because she's not like any other girl there, or most places. It's complicated for the things she understands about her peer relationships, and it's complicated for the nuances that escape her. Her feelings about boys are complicated, and her inability to adequately express or process those feelings are also very, very complicated.

December 1, 2014

When I think back to my high school years, there's a significant difference between then and now. It's a difference that matters, and one that I suspect most people my age might appreciate. When I was in high school, I knew a few people with physical disabilities, but absolutely none with developmental disabilities like Schuyler's. To this day, I have no idea where they were even educated. I'm not going to suggest they were hidden away in some evil dungeon somewhere, eating bugs in the dark or whatever. For all I know, they were receiving a fine education, but they were elsewhere. And my own development as a human being suffered as a result.

September 29, 2014

Now that Schuyler is up to her eyeballs in high school life, marching band has become something of a sink-or-swim experience for her. This has resulted in a few stumbles, such as when she took the field at last week's football game with big floppy shoes that were not just untied but actually unlaced because she couldn't do it and, for whatever reason, she couldn't find anyone to help her while the band was getting into their uniforms. The new independent model of Schuyler 2.0 has some bugs to work out of the system, but she's getting there.

August 11, 2014

Beyond mythological figures, there's the gradually disintegrating gentle lie we tell our children, the one that says that if they work hard enough or want it bad enough, they can do anything they want in the world. For kids with special needs, I suppose it's not all that different. As parents, we overbelieve, and we sell that overbelief to our kids, and that's not a bad thing, I don't think. As they grow older, like Santa, they begin to see the flaws in our lie, and as they deconstruct it bit by bit, they begin to incrementally build a more pragmatic truth in its place. They sniff out the path that does await them, the one that is meaningful and possible. As their parents, we can help, but in the end, it's not our quest. It's theirs.

March 17, 2014

I’d never heard anyone come out and admit that their company had been spooked by the internal divisions of the disability community and the enthusiasm with which we seem to embrace the concept of the circular firing squad. But it was also deeply depressing to be reminded that the world is watching.

March 3, 2014

If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation.